Calling all TNs
Comments
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Hello all- looking at the weeks weather - HOT, HOT, HOT. I live in the midwest and at least got some rain last night.
My town has been celebrating its bicentennial- 200 years. We've had food, food, parades, fireworks, music, kids games and many other things. Its been a nice time bit a lot of late nights and the heat has been miserable.
I have been lurking around and reading what all of you have been up to. I guess my contribution to the side effect info would be :
NAUSEA!!!!- From the moment I got in the car to go home after my first Adry. I suffered from nausea. It lasted the entire 2 months until I started my Parataxol. My first 2 doses were the worst. I couldn't eat or drink anything. I lost about 10 pounds (started at 115 pounds) I even slept in the bathroom the first few days after treatment. Had to get fluids after each treatment and had losts of trouble with my counts. Somehow I never had any trouble with the Neulasta shot though. For the last two Adry. I was given a patch (think it was Sancuso-not sure) but it as made my life bearable. At the time I didn't know if I could make it --but I did.
Insomnia- While on Parataxol I suffered an allergic reaction to the premed- Benedryl. Was so sick!! My ONC took me off it and I did great- other than not sleeping for the 36 hours following treatment. I roamed the house for hours while everyone else slept.
Not sure I brought anything anyone wanted to know to the discussion but if anyone can understand how it was it is you ladies- thanks for listening. At least I have been done since Sept. 2010
wishing you all well, Kelly
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Doreen--Come to think of it, I didn't have any pain with Neulasta either. Could that be from the Cymbalta too? I guess I dodged a few bullets, but I had a horrid case of fatigue and a general "whole-body-feels-awful." And then on to the rads. My skin turned a burned dark brown and ripped in places. I had to stop for a week near the end. Bad memories and I can feel for everyone going thru this now or looking forward to this chapter. But it does end and life resumes with a new normal. So glad we have treatments that work as we wait for a magic pink pill. Jan
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Kellcbk- I am in the midwest too about 40 miles south of Kansas City, Missouri. A storm swept through KC and the northern suburbs last night, but we didn't get a drop! We have not had any rain for almost 3 weeks now. We went to a fireworks show last night and 2 fires started in the grass- thankfully the fire dep't. was right there and put them out immediately! This is getting ridiculous!!
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Hi Doreen, Think Neupogen and Nuelsta are very similar - both to produce red blood cells. My DH administered my shots for 3 days after chemo. My MO told me that my red blood cell count really dropped - mine dropped to 105. So 150 is normal, 120 low. She said that is why. It can only improve now I dont have to go back to the BGC. I didn't get depressed about not being able to do stuff, but sure did get frustrated by it. I know it will improve, but I am not by nature a very patient person. My MO prescribed t3's for me. I haven't been affected by the flooding here in BC - thanks for asking.
ksmatthews. I know that I am not dehydrated, but that would make sense. I most probably drink double to the recommended daily amount.
Still I think I have been pretty fortunate with the SE's I did get. Reading what some people have to suffer I am not sure I could've made it. Especially reading yours kelly, with the nausea. Agree Titan, funny how we can have the same drug as another person and have totally different SE's.
What helped me get through what everytime I felt so low and hurt I would think it must be kicking the crap out of the cancer.
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I didn't have any major issues with chemo, either. But I was a walking chemical waste dump. I didn't let any SE get out of control before I took something to counteract it. I had some heartburn with AC so I took Prilosec and that took care of it. Then when I started Taxol, I added Pepcid. Each chemo aggravates different acid pumpers, so that's why you might need two different kinds to keep reflux at bay.
To prevent nausea, I drank 96 ounces of fluid every day starting the day before treatment, I had IV aloxi, a dose of Emend, 6 mg of Decadron and I wore an anti-nausea patch (Scopolamine). I took Emend for the next two days. I had treatment on Wednesdays and by Friday night I was able to go out to dinner. I didn't always eat much, but I wasn't nauseous.
I hate to hear of people suffering badly with chemo. It's no walk in the park, but there are so many drugs that can make it more tolerable.
CS - you ALWAYS make me smile!
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Minxie....have you had Haleven yet? It is supposed to be a great "clean up" drug for TNs and it seems to have worked for me.
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Good Evening Ladies
Jan69 - our temperature this morning was minus 4 with a thick frost. Nowhere near as cold as some countries but I really feel the cold. When people from England come over for their holidays they say our winter is like their summer brrrrr and they walk around in T shirts. We have the same here at Christmas, Easter and any holiday really where people flock to Taupo and the roads in and out are so congested. They wander all over the pavements while the workers are trying to get about and we can't get a table very easily for lunches cause they sit there so long. We call them grockles here, nicely of course, but they do bring plenty of money into Taupo, this is pronounced (toe pore).
Dormac, Kellycbk, Jan69, Tazzy, LuvRVing - my contribution on the chemo side effects would be feeleing sqeamish, I too had Jans whole body aching and feeling awful and so heavy with tiredness, mouth sores, thrush down south, chronic constipation, weepiness, depression and no taste. They gave me Emend the first morning and then each day for the three days after plus two other antinausea drugs. I didn't feel like being sick just felt a bit sqeamish. The good thing about it compared to taxol is that after the 3-4 days of having those side effects they went and I felt great for two weeks until the next treatment but with taxol although I feel tired which seems to be all the time, my neuropathy has not gone at all and is affecting my home life and working life big time. Plus I have had chronic thrush both ends and a horrible itchy rash on my hands and arms which drive me crazy as soon as I get into my warm bed, plus heartburn. So what would I prefer, the AC chemo I think, because I would know I was going to feel better after day 4 although I only just made it through thanks to the girls on here encouraging me because I didn't think I would make it through to the last one and it was only four, whereas taxol if I had made it/or make it, it will be 12 ugh. Personally I think all of it is horrible and a real trial for us but when I think back to when they didn't have those nausea/sickness meds those poor people must have really suffered. Most of the ladies on here had some, if not all the side effects that I had so they understood what I was going through and was marvellous especially as most of you know how I have that phobia about sickness. I truly would not have made it through any of this without these wonderful ladies. If I had just vomited once I would have said no more chemo. I had a great appetite through the AC chemo but it seems to have left me on taxol.
Tifj - maybe I won't long for your lovely hot weather any more then cause even I would be wishing for rain. I went into another site on here and a lady was saying that they are having fires because of the hot weather and she was having to evacuate her home. So horrible for her.
Jazn69 what do you mean your skin was ripped. I'm for rads soon, can I prevent that happening.
My radiation oncologist said I must not lose weight when I go for rads cause it alters the machine they will be using. But if my old fellar does the cafe he won't be able to be there with me cause you have to stay in their lodge from Monday to Friday and its a long way from here. I haven't been away from him for 45 years and I lose weight easily plus it won't be him cooking the things he knows I like. A big baby I know but I will miss him so much and I know I will lose weight. Oh well spose I'll have to let him be happy for five weeks without me lol. Mind you the poor sod probably needs a break from me anyway lol.
It looks like he will be taking over the cafe next weekend but it will need to be thoroughly cleaned before any equipment goes in so I will have to get my hands moving for that. Its to be called "Al's Tarmac Cafe". He is so proud of it. My son-in-lw runs all the airport for his business as well so at least he will have someone to talk to. Annie
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Remember that time not so long ago when I said I wanted to do something outrageous and run down the lake front naked and get a rose tattoo on each buttock - well I have changed my mind......
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Morning ladies.
I was told I sailed thru chemo too because of my age (42). I took my meds as prescibed down to the minute. Even set an alarm to get up in the middle of the night. I was so terrified of bone pain and nausea. Thankfully, while I felt terrible I didn't get either too bad. By the end of treatment though I was starting to get mouth sores and the WORST taste in my mouth. I know that doesn't seem like a big SE but it was terrible. Nothing I could do helped either. Water made it worse, I could eat but that only helped until I swallowed. It was so bad it used to wake me up at night. According to my hubby Chemo Brain was pretty bad for me too. We've actually fought over things because I just couldn't remember anything.
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Chemo SE for me was the constipation, heartburn and the insomnia. Luckily there are many meds to pick from to help fix these problems. Medicine cabinet was full of a little of everything. I felt like I owned half the pharmacy myself!
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Hey Cocker.... I am originally from England and agree.... -4 quite balmy weather - ha ha!! Yeah, England doesn't have seasons, just a grey drizzle with a few days of liquid sunshine thrown in. Oh! cocker I can hear in your post how much you are going to miss your old feller. We have a similar Lodge here for people that need to travel - I am lucky I live only 20 minutes from the Cancer Centre.
And as for the SE's - they all pass, eventually. Maybe chemo brain sticks around for years afterwards. Well I am going to say it does anyway
Ha ha ha... on the tattoo joke.
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Just had to post this picture from our one day in London...do pay attention to the sky! And I did nothing to enhance the color of the BLUE sky!!! I guess we were extremely lucky!
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Great picture Luv. Yes, us Brits always make out our weather is way worse than it actually is. We just remember the grey days. Although saying that, you were lucky to have such a beautiful day. They are scattered throughout the year.
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Annie, Radiation dried my skin so much that it lost its elasticity. During radiation sessions I had to have my hands over my head while flat on the table. That stretching caused the skin to tear. I used every ointment, cream, solutions to try to keep the skin healthy. Not sure if any helped, as my skin was so fried. From what the nurses said, I had an extreme case of skin reaction, so you probably won't be so affected. Also, I had a modified radical mastectomy,that might make a difference from someone with a lumpectomy. One problem with the creams if that they all have to be washed off before each treatment. I'm sure your RO will tell what to use on your skin. I feel for you that you must stay at the lodge during treatment. I was in and out of the facility in less than an hour. That leaves a lot of free time until the next treatment. Can you take your typing with you? Sorry my post is so grim. And especially hope your hands a feeling better so you can work today. Jan
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And speaking of English weather.... July 2nd and Wimbledon Tennis has been rained off.
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Luckilly, I read the posts all weekend. So much to catch
up on.
I survived my day out kayaking. Unlike Luv, my 4 hour tour involved paddling the whole way. We did about 7 miles on the river. Luckilly my leg and butt held out till the last 15 min, at which point they began screaming "get me out of this freaking boat right now"! There's not much you can do to shift position in a kayak, and sadly we were in a part of the river that isn't that clean, or I would thought about tipping and swimming the rest of the way, lol. We had a great steak barbecue after. An absolutely wonderful day!
OBXK - definitely scads of good karma for you! It's a great feeling when you get to a point where you can help others.
McCrimmon - you look so happy! If you're already enrolled in a group insurance plan, I think you should be safe.
Tazzy and Luah - I know I'm late but Happy Birthday Canada!!!!!
Kayak2 - great info, thank you.
Catwhispurrer - congrats! That flannel shirt tip was great. I got so tired of changing my clothes, wish I had thought of that.
NavyMom- I've tried speaking up, but like Naan said, it doesn't work so well with our MO. Every answer is "it's not out standard of care". I tried my da*nedess to get a PET when I was diagnosed and got nowhere. I know it sounds bizarre, but I'm actually hoping to be BRACA + because they will have to follow me more closely. I'm not comfortable with just an annual mammo as my follow up, and will have to think about private paying for a 6 mo mammo if I don't test positive. (annual mammo is the only testing I will be having)
Dormac - Neupogen is just like Neulasta, except it requires more doses. Neulasta is one shot after each chemo.
3 quick tips:
If you're newly diagnosed, take a "notebook buddy" with you, especially for your treatment planning appt's. Also keep a notebook with questions you want to ask your doctor, because when you're in the appt., chemo brain will
make you forget them.
Eyelashes - someone on here warned not to freak if your eyelashes got thin again, months after tx. Because they grow back at the same time, they may shed
on a similar schedule.
Stiff Hips - many of us compared notes and found that we had stiff hips during treatment. If I sat for a few minutes, I looked like a hunchback crone for several minutes after standing, till I could manage to stand up straight. It got better quickly after tx ended.
Jan - I live off one of the major routes heading to Cape Cod, so I hear you about the tourists. (I'll post a tongue in cheek post I wrote for tourists for you, it may make you laugh). I did get a break this weekend. We were bit*hing because gas prices jumped 30 cents because of the holiday. When I went to fill up, they had programmed the pumps wrong, so I didn't get the price increase!
Titan - I'm like you, compared to others on here I sailed thru chemo. Someone recently posted on here that their MO said that it may be genetic in some people, and that there was no correlation between SE's and effectiveness.
Kellybk - hope you guys in the Midwest get a break, you've been in triple digits for awhile. That nausea sounds horrendous!!!
Luv - you're absolutely right about the heartburn. I had bad reflux before starting, and by 2 weeks in I has ulcer symptoms (had them several times) For anyone else who has bad reflux, my PCP put me on Dexilant and it has been the first effective rx I've had for reflux.
I did the 96 ounce thing too. Brewed green tea and fresh ginger and put the jugs in the fridge. That way I knew the jug had to be finished by the end of the day. (don't normally drink a lot)
Cocker - geez, my clothes are on!!! Well ok, I was in a bathing suit while kayaking! Is old fella going to be away 5 days a week, every week, to run the cafe?????? If so I may be rescinding my vote for living the dream. BTW, I understand it's a serious problem, but could I please have a dose of that "losing weight easily" thing?0 -
Hi All,
took the month of June off as I needed to focus on painting for lots of shows.
Inmate..NED!!!! Yea!!!
Heather...here's to good insurance.
Cocker..your stories are too much.
Symptoms..me it was horrible mouth sores that interfered with treatment dosage amount and bone pain. One year out and the main thing I notice is that I CANNOT multitask liek I used to and my memory isn't nearly as good as I want it to be.
Right now I see the onc 2X a year,breast surgeon once and RO once a year. Get a tommographic mammogram once a year and 6 months later bilateral breast MRI.
Have been swimming nearly every day since Memorial Day. Really trying to stretch that area where the surgery was and keep my mobility.
Have missed everyone and love to read everyone's stories.
Taking the week off to do more painting. I have soem major shows and open studios in just 2 weeks...oy, I hate framing.
Good wishes and hugs to all.
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This is for Jan and anybody else who has the delight of tourist influx. For those who aren't familiar with a "rotary", it's a junction where traffic has to enter a circle and flow counter clockwise. They are very common in the Northeast. What makes them even worse is that different states have different rules. (in Mass, the driver in the circle has the right of way. Connecticut used to have the person entering the circle have the right of way, till all the people from Mass going to the casino caused so many accidents)
A Public Service Announcement..Welcome to Massachusetts
July 2, 2011
As I was driving down the highway Friday, I was reminded it’s that time of year again. Our roads are overflowing with tourists heading to Cape Cod. I thought it might be helpful to inform you of some of the rules of the road here……which may save your life. We aren’t as bad a State of drivers as we are reported to be…….but there are some things that do put us over the edge and make us want to throttle tourists. We are also, like most States, having financial problems, and ticketing tourists is viewed as an excellent source of revenue.
This is nothing new…..y’all are familiar with this. The further left lanes on a highway are the “passing lanes”. Some of our cross state highways are only 2 lanes on each side so this becomes particularly important for your health and safety!!! You do not get to cruise in the “passing lane” (or often referred to here, as the high speed lane) at the speed limit, because you don’t want to keep having to change lanes to avoid motorists entering the highway. Doing so will cause you many problems. Motorists who have to move into the travel lane to get around you, will promptly give you a visual lesson on our “State Bird”. Looking up in your rearview mirror and seeing an 18 wheeler an inch from your bumper can cause you serious cardiac problems. Even worse would be to look up and see one of our State Troopers glaring at you from a millimeter from your rear bumper. Please remember that the Trooper will not be passing you on the right to get around you,,,,and his cruiser has ram bars! I’m sure that at the very least you will be screamed at when he/she pulls you over and I’m pretty sure they have some obscure laws that will allow them to ticket you for not following the rules of the road.
Do please move over to the passing lane, when you see any type of emergency vehicle in the breakdown lane. On a highway of over 4 lanes…..it’s the law and you will be ticketed if you don’t. Even on lesser lane highways we do it as a courtesy. We have in the recent past had many State Troopers killed or seriously injured being hit my motorists. We like our State Troopers and ask that you respect their safety.
Massachusetts has tons of what are called “rotaries”. You may know them as roundabouts. Rotaries are circles of traffic, traveling 40-50 mph, with multiple entrances/exits off the circle. If you wish to live, please remember this……..THE MOTORIST IN THE CIRCLE HAS THE RIGHT OF WAY!!!! Do not shoot into the circle thinking that people will stop for you! (Again remember the 18 wheelers and Staties with ram bars).
And last but not least, Funeral Processions. (We have a lot of these in the summer due out of state motorists!). You will know it’s a funeral procession by three things: a bright orange sticker hanging from the rearview mirror, headlights on, and flashers on. A FUNERAL PROCESSION HAS THE RIGHT OF WAY AT ALL TIMES. (see, y’all thought we were not courteous drivers up here and YES you will be ticketed if you don’t stop). Funeral processions do not have to heed red lights, stop signs, yield signs etc. All traffic is to stop until the whole procession has passed. (We even bow our heads and say a prayer for them).
Welcome to Massachusetts…..we want you to enjoy your time here.
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Kathy, Our local saying is "If it's tourist season, can we shoot them?" They just drive so slowly along our mountain roads. Motorhomes,etc. In town, the big buses pull into the grocery store parking lot and unload very tired, slow-moving tourists who head for the produce section, buy 1 peach, and then get in line, paying one by one.
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Hello ladies. Hope everyone is doing well and those in treatment suffering minimal side effects! I am just checking in. 4 days post 1st AC treatment and am feeling surprisingly great! A little headache here and there. Today a little more tired than usual but other than that nothing else! I am rinsing and brushing with biotene. Drinking 96oz water a day. I am hoping this will stay this way throughout treatment. But in the back of my mind I am wondering is the chemo doing its job since I really don't have any side effects??? I sure hope so! Anyway a question while I have you.... I had my first treatment last Thursday. I am planning on going away this Friday til next wed and will have my 2nd treatment next thurs. I am trying to gauge when I will need to get to my wig place to get my wig put on. I had one made and am going to get it temp placed for 4 weeks so I don't have to worry about it. Can sleep in it shower everything. Anyway. When does hair typically start coming out and when it does how fast? I don't want this to happen when I am away! Any insight would be helpful! Thnx!
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Painting - Great to see you and hear things are going well!
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Dam, takes me so long to type, I miss people!
Melissa - glad you're doing well, and according to someone's MO (can't remember who posted it) there is no correlation between SE and effectiveness. I had Taxol first, so can't help with that question, but your wig sounds really interesting. Haven't heard anyone on here mention one like it?
Jan - sadly, summer isn't an allowed hunting season in Mass!0 -
I am new at this. Had BMX in April w/ reconstruction. Diag. is DCIS, comedo pattern, high grade (3 of 3), 7cm with ITC in 2/4 SLN. TN. Had to have one of my implants removed in June because of an infection, so chemo was postponed. Now have a choice of whether to go ahead with chemo (ACT), which would be my only treatment option, or forego further treatment. My oncologist at home recommends treatment, based on age, health etc. The oncologist at City of Hope recommended no further treatment, based on statistics.
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Kathyrnn - I just wanted to mention and am not sure if this is happening to others, but I am almost 2 years out from chemo, and my eyelashes still has a cycle, just like hair. They are super long, beautiful, absolutely stunning for sometime and then they become short, thin and the longness is gone after a while. I will have to note down the dates so I can see the cycle. Right now, the long ones are falling off, and they have all become uneven. At some point, they will all grow to one size and become dark and beautiful again. I have to go see the hair specialist to ask her why this is happening. I know this type of cycle happens to hair, the sleep phase, the falling phase and all that, but with eye lashes, I don't think this used to happen to me before chemo. Anyone else has this problem?
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Mamabr - Welcome. I'm going to refer you back in the thread to the top of page 526. FernMF asked a similar question, and there were many good answers, that may help you with a difficult decision. Please come back, with anymore questions those posts may leave you with.
Lovely, I'm not far enough out to have noticed it yet, but I'm glad someone warned me.0 -
Thank you kathrynn
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Melissa--My hair started falling out about 2 weeks after my first chemo. I had ACT all at once.
Kathy--OK, you win the tourist story. Our tiny communities couldn't survive without tourist money, so we really don't shoot them. In winter they sometimes slide off the road and damage themselves.
Mamabr--You are in a hard spot to make a decision. Is there any way you can get a third opinion? As it stands now it seems like you'd be 2nd guessing your decision for the rest of your life. Hang on here, others will be posting soon with more ideas for you to consider. Best wishes as you journey thru this process.
Painting--So nice to hear from you again. Where are your galleries? I remember your posts from months ago and loved your art.
Am I the oldest on this site? I'm 70. This sounds wierd, but this is such a better age to get BC. I choke up when I read about those of you with young children. My heart goes out to all of you, but especially those with little ones.
Jan
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Brilliant post about the driving kathyrnn - think that can apply to many places that bring tourists. And yes we cant hunt them either
Painting...my Mum is an artist so I know only too well what you mean - she oftens disappears to her studio for many a week... Comes up for air for coffee and meals.
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Jan - You are correct, difficult decisions. I hope to be 70 one day so that decision making becomes easier.
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jan..just a few years younger than you..67...we don't have any small ones to care for..and can nap when needed..
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